A Disease Unseen: Why Activists Strive to Raise Celiac Disease Awareness

RENO, NV--(Marketwired - June 12, 2015) - Two staggering statistics surround celiac disease (CD): first, at least three million people in the United States suffer from this autoimmune disorder, and second, around 97 percent of those people are undiagnosed.¹

The public knows more about celiac disease than it did even five years ago, thanks to the gluten-free trend in food that surfaced a few years ago. In addition, researchers and activists alike are raising awareness not only about an often under-diagnosed condition, but also about promising potential treatments.

What is Celiac Disease?

In order to understand how to treat celiac disease, it is important to first understand its causes and symptoms. Celiac disease is an autoimmune disorder that affects approximately one in one hundred people worldwide.²

In the most basic sense, celiac disease is an intolerance of gluten, and as such, it develops when a person who is predisposed to it begins to eat foods containing gluten.

While many people are familiar with the term "gluten" from recent movements to improve food labeling, they may not know exactly what it is.

Gluten is a grain that is commonly found in wheat, rye, barley, and corn, and it contains two proteins that are harmful to those with celiac disease. The effects of this disorder can be viewed as a spectrum with mild stomach irritation on one end and serious health risks on the other, including infertility and intestinal cancers. If you believe that you have celiac disease or even gluten insensitivity, you may want to see your doctor to get a series of blood tests, and/or an endoscopy.

Celiac Disease and Scientific Discovery

Since awareness about CD has increased, more scientists have begun to study it. Recently, researchers have found links between celiac disease and other autoimmune disorders as well as the body's nervous system. In a study published in JAMA Neurology, it was revealed that there may be a link between celiac disease and nerve damage.³ People with celiac disease are 2.5 times more likely to develop neuropathy. Researchers looked at the association between celiac disease and neuropathy in diagnosed patients in Sweden, and a similar figure with respect to this association was reported in the United States.

New research has also shown that those who ultimately are diagnosed with CD receive that diagnosis long after the disease has had lasting effects on them. Late diagnosis is a serious concern since celiac disease can lead to the development of other autoimmune disease, including multiple sclerosis and type 1 diabetes. According to a study published by the United European Gastroenterology Journal, this is largely due to the fact that screening resources are often limited and because the symptoms of CD are similar to those of irritable bowel syndrome (IBS). Those at risk for developing CD, including people who have a family history of the disease and people with other autoimmune disorders, should be screened if they experience sensitivity to gluten.

Treatments on the Horizon

Currently, the only known treatment for people who have celiac disease is a strict gluten-free diet. Maintaining this diet has become easier for many since food labeling guidelines have become more comprehensive; however, it can still be difficult for CD patients to identify if what they are eating contains gluten. Several years ago the FDA established a definition of "Gluten-Free" at 20 parts per million (ppm). Now the law only allows vendors of foods, including dietary supplements to use the term "Gluten-Free" on their label, only if the food contains less than 20 ppm of gluten. Still, since this is a relatively new requirement, not all food vendors are compliant yet.

In addition to clear labeling, researchers like Doctor Ingrid Swanson Pultz have also begun to develop medicinal treatments. In an interview, Dr. Pultz explained that she and her group at the Institute for Protein Design "utilize expertise in computation protein design to engineer novel therapeutics for celiac disease." Put more plainly, her group works to discover proteins that could be used to treat the symptoms of celiac disease.

"We currently have a lead molecule, which is very effective in simulated lab gastric conditions at breaking down the problematic regions of gluten for people with celiac disease," Dr. Pultz explained. Those with CD would be able to take this supplement in pill form to break down gluten in the stomach before it can get to the intestine and cause damage to the body, she added. The enzyme is currently undergoing more lab studies, and then will undergo preclinical assessments, which is required by the United States Food and Drug Administration, she said.

Dr. Pultz earned her Ph.D. in microbiology and founded the International Genetically Engineered Machine (iGEM) competition in 2007.⁴ iGEM is responsible for the development of this supplement, which could be greatly beneficial to those with celiac disease.

Ultimately, Dr. Pultz hopes that this treatment will be available to CD patients. She has heard several stories from those suffering from CD that have shown her the life-altering effects CD can have. For example, she met a couple with a daughter with celiac disease who left for college, and when the college was unable to meet the strict requirements of her gluten-free diet, she had terrible symptoms and hospitalization, which forced her to leave school and take her finals from home.

She also met a woman who had suffered from several miscarriages before finding out that her health problems were caused by celiac disease. Again, many of these stories stem from the fact that CD is under-diagnosed and requires such a strict gluten-free diet. Much more research is needed to address this under diagnosed disease with solutions.

¹ The University of Chicago Celiac Disease Center. "Celiac Disease Facts and Figures." Encyclopedic Dictionary of Genetics, Genomics and Proteomics (2004). Web.

² "What Is Celiac Disease? -- Celiac Disease Foundation." Celiac Disease. Celiac Disease Foundation. Web. 19 May 2015.

³ Thawani, Sujata, Thomas H. Brannagan, and Benjamin Lebwhol. "Risk of Neuropathy in Patient With Biopsy-Verified Celiac Disease." JAMA Neurology (2015): JAMA Network. 11 May 2015. Web. 19 May 2015.

⁴ Ingrid Swanson Pultz, Ph.D., email interview, May 17, 2015.

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